CMF Question
Comments
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cabmom....I sent you a PM. To collect it, go to the top of the page and click on PRIVATE MESSAGES.
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Cabmom, I was in a similar situation as you--low oncotype score but wanted to do everything possible to prevent recurrence. When my onco suggested CMF, it just felt like the right thing to do. I wasn't so much worried about losing my hair, as I was the effect that might have on my kids. I already had some slight hair thinning, but it didn't get any worse during chemo. I also began using Nioxin hair products, which you can buy at Great Clips. For whatever reason, it seems to work.
I finished my treatments in June. The regimen is very doable. However, don't hesitate to ask people for help. If you have any friends or neighbors that can pitch in, keep them on speed dial because you might have a few days after each treatment when you don't feel 100%.
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samiam40, yes I think our situations are similar. It was a hard decision for me but just thankful that I've made it and ready to move on with treatments. Thanks for the advice on the hair products, I've had several people mention it....I'm going to buy that before I even start treatments. Did you use it daily? Also, did everyone lose their eyebrows and eyelashes on CMF? If so, did it take a while after chemo for them to come back as well? Sorry I have so many questions, just want to totally understand what's going to happen
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Cabman, when is your next appointment with your onc or radiation oncologist?
As for your questions.....they are good ones and questions that we've all had as we started the treatment plan. I did not lose my eyelashes or eyebrows on CMF. I don't think I've ever heard anyone say that they did lose them. In fact, one of the things about doing CMF chemo is that you look so normal, people often don't take your treatments seriously. You don't scream cancer like those who lose their hair so everyone thinks you're doing just fine, look great, and have no problems. You may even get tired of people saying, "Oh you look so good." LOL
Gotta run. It's bowling day!
Catch you later.
Rita
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Hi Cabmon!
No one can predict which side effects you will have and which ones you won't have. I am someone who tried out each possible CMF side effect, even the very rare ones. But even with that, it is a doable chemo. And the advantage of not losing your hair is that your son will not be frightened by the change of your appearance. Plus it is nice not to lose your hair. CMF is a doable chemo but it is also an effective chemo so don't worry about your choice. Even so, you may want to have some back up to pick your son up at school for a few days on the week when you have chemo. I had someone drive me to and from chemo so that is something else you might consider.....some of the anti nausea drugs can make you very tired.
As for hair loss, after my fourth infusion, I had some hair loss.....enough that I noticed a big clump in the drain of my shower after I washed it. I got a pep talk from some of the gals on the CMF site and, sure enough, that was the only time I lost alot of hair. No one noticed it and at the end of my 8 tx, my hairdresser said that she would never know that I'd just finished chemo by the way my hair was. I never lost eye lashes or eye brow hairs (or if I did they were so few that I never noticed them). I did use the Nioxin products and I did not wash my hair every night---more like every two or three nights.
One other side effect about which I was warned is constipation....that is more from the anti nausea meds than from the chemo....so you might want to have some colace on hand or eat some prunes the night before your first chemo. I always ate breakfast before I went---a real breakfast-soft boiled eggs, toast, coffee-because I like breakfast. And I brought my own frozen treats to suck on during the chemo---in my case lemon Italian ices--it helps keep mouth sores away if you keep your mouth cold.
This board has a wonderful group of ladies who will be there for you if you have any questions. And remember the fear of the first chemo is probably worse than how you will feel afterwards. That is normal. I remember a feeling of great relief after I had the first infusion last year. Let us know how you do.
Mandy
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ritajean, thanks again for the info. Happy to hear that about the eyebrows and eyelashes. I am waiting on the call from the oncologists nurse to set the next date but did get my call back from the surgeons office this morning and my pathology report came back with no signs of cancer....YEAH! SO HAPPY! I should know all the dates by the end of this week or at least that's what I'm hoping. My final appt with the surgeon is the 14th, so after that I should be done with that. Unfortunately, on the "Oh you look so good" part, I can't remember that being said a lot now so I'm not going to look for it in the upcoming months
(ha, ha) but I'll be more than happy to hear it if it comes my way. I so hope that you're right !mandy1313, thanks for all the encouragement and information on the eyebrows, eyelashes, hair loss, etc. I know each case is different but I am so hoping for the best outcome and hearing from each of you is so encouraging and uplifting. This truly is an amazing group of ladies. On the hair loss side, my son is who I am most concerned with. I know he would try to be okay but inside I know he would be worried and I just hated the thoughts of putting those worries in his head at this age. I will be extremely grateful and thankful, if it is not noticeable to especially him.
To all the ladies on this thread......thanks from the newbie on the board. I appreciate each and every one of your comments.
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I, too, am glad to hear that my eyelashes and brows will probably not fall out. I just finished round two on Friday and survived fairly well. It's like having a three day hangover, without the fun acquiring it.
While not enjoyable, it is doable.
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Hey Kate......Two down! What do you have left....4 more? Glad you're getting through it pretty well. Keep us informed. We'll be your cheerleaders!
Cabmom............GREAT PATH REPORT! That's super news! That's one less thing to worry about now!
Well... I'm off to Yoga. I'll stop back in later.
Hugs to all of you in treatment!
Rita
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Hi Gals!
One of my on line buddies gave me a tip that I am going to pass on to you. She said to get a bone density test since chemo and rads can affect your bone density. A year ago, pre chemo and pre rads, I had a bone density test which had me in the highest category for strong bones. I just had my new bone density test and I have osteopenia in the spine....likely from the chemo and rads. Since neither my onc nor my rads onc suggested the follow up test (I had to request it), I am suggesting it to those of you who have not had a post chemo one. Better to catch these things sooner rather than later is my theory.
Have a nice day.
Mandy
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Thanks Mandy1313 for the tip. My onc's haven't requested a bone density test for me, are they suppose to before chemo begins? Since chemo will be begin early November for me...just wondering if everyone has this done or it's just random?
On another topic, does anyone know if it's safe to have highlights a few weeks before chemo begins or does this weaken the hair to much as well? Don't really want to do anything to cause my hair additional issues. So many things that I just don't know....hoping one of you guys have some idea.
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Hi Cabmom:
My oncologist did not suggest the base line pre chemo bone density test. My internist did and she was the one who ordered it. I am glad that I had it so that I could clearly see that there was a change in the year of treatment. So you might ask your onc or your main physician to order one. I had suspected there was a change because I felt as if I had shrunk...and I had...a full 1/2 inch in the past year. So now that I know I will look into what my options are to keep healthy bones and I believe that I have many options.
Take care all.
Mandy
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Hello Gals,
I want to send my support to Cabmom. It is indeed a hard decision when the doctors leave it up to you - chemo, yes or no? And which kind? I was in the same situation but am not sorry I chose to do CMF. As you've heard from everyone - we all have different experiences. I am one of the lucky ones: Very few side effects, and as long as I keep ahead of the nausea by taking the meds BEFORE I feel nauseous. Not even mouthsores. Feeling tired for one day after tx, but am OK afterward. I am about to get the 6th treatment, so the end is in sight. I did lose a lot of hair, maybe 50% is my guess, and look pretty shabby, but nobody seems to notice but me... The eyebrows and eyelashes are also very sparse, but still there basically. Otherwise I have no complaints and looking forward to the end.
It's good to read all your letters and to talk to you. Good luck to everyone. Elisheva.
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Thanks Mandy1313 for the bone density information. I will definitely be checking into this.
Elisheva, thanks also for the information. Until you, I had not heard of too many people that had lost up to 50%, only just a few but it's great that no one really noticed but you. That's still great.....Also, happy to hear that you were one of the lucky ones and that you was spared some of the SE's. I'm so happy for you that the end is near and can't wait until I can say that as well
! I'm hoping to be one of the lucky ones as well with the SE's and I think I am happy with my decision both on doing chemo and on CMF. Can't say that I'm not scared to death still but I know, thanks to all of you, that I will get through it and I will be stronger because of it. I can't even begin to tell you how happy I am that I found this site, it's amazing........0 -
Cabmom...I don't think there would be any problem coloring your hair. I even did it during the treatments.
Elisheva...time has gotten away from me. Wow! You are almost finished! I'm so glad things have gone pretty good for you during the treatments! Refresh my memory, please. Do you have to do rads yet or do you move right on to the hormonal pill? Hugs to you!
I was given the baseline bone density test after my chemo and right before I went on the Arimidex.
Hope everyone is doing well today.
Rita
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Thanks, Rita. Yes, I got only 3 more to go, with radiation after that.
Cabmom - I did color my hair just before chemo started. My hairdresser thought that should be OK. Now, 3 months later, the blond was washed out and the grey reigned supreme, so just yesterday I repeated the coloring. I used a dye without amonia (Colorsilk by Revlon, which has the additional benefit of being very cheap, about $4 only.) I'm sure that it does no harm. About highlighting - I don't know, because that is a harsher treatment. Why don't you consult your hairdresser? They have experience with chemo patients (at least mine has.) Good luck to you.
Elisheva.
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Thanks, Rita. Yes, I got only 3 more to go, with radiation after that.
Cabmom - I did color my hair just before chemo started. My hairdresser thought that should be OK. Now, 3 months later, the blond was washed out and the grey reigned supreme, so just yesterday I repeated the coloring. I used a dye without amonia (Colorsilk by Revlon, which has the additional benefit of being very cheap, about $4 only.) I'm sure that it does no harm. About highlighting - I don't know, because that is a harsher treatment. Why don't you consult your hairdresser? They have experience with chemo patients (at least mine has.) Good luck to you.
Elisheva.
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ritajean and elisheva, thanks for the information on the hair treatments. I will talk to my hairdresser and see what she says. ritajean, that is so great that you was able to do coloring on your hair all the way through. I don't know that I'm that brave. I would like to have it done before starting just so I at least feel good about how I look regardless of what happens
! Thanks ladies....0 -
Wanted to share my good news about my cat scan with you ladies. I had an ordinary chest xray and they thought they saw something in my lungs. I went into full denial but had the follow up cat scan yesterday....and the good news is that it is a lung infection. So antibiotics here I come!!! It sure beats the alternative!!!
And by accident hubby and I are going to a dinner tonight----both President {former) Clinton and Steven Speilberg will be there. I am so excited to be going to something like this....it has been a long year!!!
Have a nice day everyone!
Mandy
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Mandy...wonderful news about the cat scan! Did you ever in your wildest dreams think that you'd be happy about having a lung infection? Crazy, isn't it? Take those antibiotics and knock it right out of there.
As for your dinner tonight, I'm envious. I am a real Steven Speilberg fan! Have a great time!
Rita
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Rita, you are so right. Never did I imagine that a lung infection would be good news!!! If I can get a photo of Steven Speilberg (they said cameras were allowed), I'll send it to you.
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Yay Mandy. You must have been so worried about the cat scan. I'm very glad it came back clear (for cancer). Now you can relax now and enjoy your dinner with the stars!! How fun!
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Mandy, congratulations on your cat scan....wonderful, wonderful news!
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Hello CMF'ers...
All's good on the home front here !!!
Cabmom, just my two cents on CMF txt. I was able to work full time thru txt in a very physical job. I stayed ahead on any possible nausea with preventative meds. My biggest problem was constipation which I finally seemed to get regulated with the use of Miralax by about the 4 month. Kinda a slow learner!!! I drank upwards of 80 to 100 ounces of water daily. My "worst" day was usually 48 hrs after infusion day. Not horrible, but did enjoy a lil Cream of Wheat for a few dinners!!!
Hair loss, after txt two I thought I was going to go bald, ended up just thinning, and as with others probably lost about a 1/3 of my hair. Don't panic if it starts a pretty good shed !
Personally exercise helped me immensely thru txts. I was able to train for the 3day/60 mile walk during txts which I firmly believe helped ward off any fatigue issues.
I have the hunch you will be pleasantly surprised how tolerable CMF can be!!! Go get um !!!!!!0 -
golfer779, thanks so much for the info and for the words of encouragement. I will probably panic when and if it does start to come out and will be back on here for words of encouragement and more wisdom. I think it's amazing that you were so active during treatments and that gives me lots of hope. I can't passed thinking I'm going to be stuck in bed feeling sick the whole time...which I know is all in my mind or at least that what I'm hoping for, that that image is just all in my mind. I'm so hoping to be one of the lucky ones with few SE's but I guess I will be like everyone else and deal with whatever comes my way and be thankful that it's not worse. It's so nice to hear from all of you that you're still thankful that you did the CMF. I've talked with others that have done a different type and have so many regrets but this thread is always so positive and full of hope, which is something that lately I seem to need a lot of. Thanks again......
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Cabmom, I did have alot of side effects but I was not stuck in bed the whole time. I just led a quieter life than usual. And I ate alot of mac and cheese. Don't worry it will not be as bad as you imagine.
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Thanks Mandy1313 for the info and I know that it will be a wait and see kind of thing. I'm going to plan for the best outcome
! I now have to wait until next Thursday to see my onc. I was hoping to have all my answers about my treatments by the end of this week but didn't happen. The waiting is SO HARD. Well I guess a few more days won't be so bad. I'm trying to get my list of questions ready for him (thanks to some of you ladies for the wonderful suggestions) so I will have a better understanding of what to expect after I leave his office. I LOVE MAC AND CHEESE ....that I could handle. 0 -
Mandy - That was good news about your cat scan. It is crazy what we are grateful for. You must be so relived.
Cabmom - Once you get all your dates from your dr. that will be one hurdle down. I think we can all say that the anxiety of the treatment is worst then the treatment it self. It is the unknown, but I am sure you will do fine and we will all be here to help you thru it.
As you can see I am having trouble sleeping tonight so I figured I would read posts and catch up. Hoping it will make me tired.
I hope everyone has a nice weekend. To those of us who have a 3 day weekend enjoy.
Colleen
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Hello my dears, I've been MIA and I do apologize!!! Have been mostly posting on other threads, but I can't forget my gals on CMF!!
Colleen: WAAAAAAAAAAAAAHOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO
Way to go, girl!
Mandy, Rita, Cabmom, Harley, and everyone else, I hope you are all doing great and feeling well! Rita, I am sorry you are having back issues; arimidex is the gift that keeps on giving isn't it. I am having knee issues now, and I never have....makes it impossible to work out. Don't you use magnesium for this? I seem to recall you had a knee issue awhile back too.
Harley, hope the new meds work for you, sweetie. You've been missed.
xoxoxo to all
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Thanks for all your positive comments. I am just feeling really crummy. Really tired and now my right thumb is going numb off and on. I started physical therapy on Monday and they think it is a pinched nerve. That along with me not being able to sleep anyway is really miserable. I asked for Ambien CR and it does not help as you can tell by my writing this at almost 4 in the morning. My next chemo is the 20th and which will by my 4th out of 6. I know this will be over soon but it won't be soon enough for me.
Take care to you all, Pam
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Aw Pam. I'm sorry you are feeling so crummy. If the Ambien isn't working for you, ask your doctor for something different to try. You need to be sleeping in the middle of the night and not worrying about stuff.
Also, you know this, but you are right in the middle of it now, and it WILL be over soon. Think about the fact that by New Years Eve, not only will you be done with treatments, but you will probably be feeling almost completely better. Take care.
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